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Part 2. Pamela Coughlan – Needs of a “wholly different category”

Pamela Coughlan – This series of blogs takes a closer look at the Coughlan judgment, its implications for long-term care in the community and how an understanding of the clinical facts of the case can assist you in your fight for CHC Funding. In today’s blog, we address the Court of Appeal’s statement that Ms. Coughlan required “services of a wholly different category” than those that could lawfully be provided by Social Services. If you missed Part 1 of this series, follow the link below!

Read Part One of this series – But Pamela Coughlan is not really eligible for CHC, is she…?

As we discussed in Part One, the Court of Appeal’s findings in respect of Ms. Coughlan’s care requirements in 1999 continue to underpin the eligibility criteria for Continuing Healthcare funding to this day. Of particular importance was the judge’s statement that Ms. Coughlan and her fellow residents required “services of a wholly different category” than those that could lawfully be provided by the Local Authority.

As one insightful commenter has helpfully explained under Part One of this series, the judgment also clarified the legal division between the type of care delivered by the NHS and Local Authority in the community: the Local Authority could provide nursing services as part of a package of care, but only if those services were “merely incidental or ancillary to the provision of accommodation”, and of a “nature” that Social Services could reasonably be expected provide.

“The NHS does not have sole responsibility for all nursing care. Nursing care for a chronically sick patient may in appropriate cases be provided by a local authority as a social service and the patient may be liable to meet the cost of that care according to the patient’s means. The provisions of the Health Act and the Care Act do not, therefore, make it necessarily unlawful for the Health Authority to decide to transfer responsibility for the general nursing care of Miss Coughlan to the local authority’s social services. Whether it was unlawful depends, generally, on whether the nursing services are merely

incidental or ancillary to the provision of the accommodation which a local authority is under a duty to provide and
of a nature which it can be expected that an authority whose primary responsibility is to provide social services can be expected to provide. Miss Coughlan needed services of a wholly different category.”

v. North and East Devon Health Authority, ex parte Coughlan

Read the full judgment here: https://www.bailii.org/ew/cases/EWCA/Civ/1999/1871.html

In the Judge’s view, Ms. Coughlan’s needs were not “merely ancillary or incidental” to the provision of her accommodation, and were of a “nature” the Local Authority could not be expected to meet i.e., the services Ms. Coughlan required as part of her package of care were of a “wholly different category” than those expected to be provided by Social Services.

Let’s have a closer look at the nature of Ms. Coughlan’s needs and shed some light on the Court’s seemingly mysterious findings.

In Part One of this blog, we used the Spinal Injury Association’s description of Ms. Coughlan’s care requirements to assess her “level of need” in each of the twelve care domains on the 2018 Decision Support Tool. On our assessment, Ms. Coughlan presents with one SEVERE level of need in Other Significant Needs; three HIGH levels of need in Continence, Mobility and Drug Therapies; one MODERATE level of need in Skin; three LOW levels of need in Breathing, Nutrition and Altered States of Consciousness; and four NO NEEDS in Communication, Psychological & Emotional Needs, Cognition and Behaviour.

Care Domain	Level of Need
Breathing	LOW
Nutrition	LOW
Continence	HIGH
Skin	MODERATE
Mobility	HIGH
Communication	NO NEEDS
Psychological & Emotional Needs	NO NEEDS
Cognition	NO NEEDS
Behaviour	NO NEEDS
Drug Therapies and Medication	HIGH
Altered States of Consciousness	LOW
Other Significant Needs	SEVERE

If you’re preparing for a CHC assessment, read our selection of helpful blogs on the subject which will let you know what to expect at the MDT:

Preparing for the Multi-Disciplinary Team Assessment

What Happens At The Multi-Disciplinary Team Meeting?

Don’t let the Decision Support Tool become a ‘tick box’ exercise

What Is The Role Of The MDT Coordinator?

Can The MDT Panel Refuse To Proceed If I Have An Advocate?

Who completes the Decision Support Tool in NHS Continuing Healthcare?

Learning valuable lessons prior to your MDT Assessment and how to avoid pitfalls

Looking only at the assessed levels of need, it is difficult to understand why Ms. Coughlan was described as requiring services of a “wholly different category” than the vast majority of people living with Alzheimer’s or Dementia, particularly those who require 24-hour care in a residential setting. However, once we apply the “Primary Health Needs Test” to the evidence gathered in the twelve care domains, the reasons for the Court of Appeal’s description should become clear.

As anyone who has pursued a claim for NHS Continuing Healthcare Funding will know, eligibility depends on the application of the Primary Health Needs Test, a.k.a. the Four Key Characteristics of Nature, Intensity, Complexity and Unpredictability. If one or more of these criteria are found to be met, the person’s primary need is for healthcare; i.e. their needs are more than ancillary and incidental to the provision of accommodation and require care of a nature the Social Services cannot be expected to provide. The Decision Support Tool explains that “each of these characteristics may, alone or in combination, demonstrate a primary health need, because of the quality and/or quantity of care that is required to meet the individual’s needs. The totality of the overall needs and the effects of the interaction of needs should be carefully considered when completing the DST.”

If you’re preparing for a Continuing Healthcare funding assessment for yourself or on behalf of a friend or relative, read our essential tips on how Covid-19 has affected the process!

COVID-19 – The Impact on NHS Continuing Healthcare Funding (‘CHC’) and How The Current Changes Will Affect You!

Discharged from hospital to a care home? Is your relative getting their entitlement to 6 weeks’ free care?

Are you ready for 1st September 2020? CHC Funding Gets Back to Business

Let’s have a closer look at the four Key Characteristics and how they might be applied in Ms. Coughlan’s case, using the summary of needs from the Spinal Injuries Association. We shall begin by setting out the nature of the needs.

IMPORTANT – The analysis of the “nature” of the needs should be the longest and most detailed of all the characteristics. The nature characteristic should provide a comprehensive picture of the person’s holistic needs, clearly setting out their daily care requirements in each of the twelve care domains as well as the interventions required to meet them. If this description is not sufficiently detailed, it will be impossible to apply the intensity, complexity and unpredictability characteristics appropriately.

Nature

This describes the particular characteristics of an individual’s needs (which can include physical, mental health, or psychological needs), and the type of those needs. This also describes the overall effect of those needs on the individual, including the type (‘quality’) of interventions required to manage them.

Ms. Coughlan was seriously injured in a road traffic accident in 1971. She sustained a complete C5/6 spinal cord injury. The cervical spine is located between the shoulders and the skull. In general terms, the higher the injury to the spinal cord, the more debilitating the effects. As with the majority of C5/6 spinal cord injured people, Ms. Coughlan was left with complete tetraplegia (with sensory and motor paralysis), meaning she has no sensation or movement below the level of her injury. There is no treatment for a cervical spinal cord injury, resulting in a need for life-long care.

There is a common misconception that CHC Funding is only available to elderly people in care homes, but many young adults also qualify. Find out more here: Who is entitled to CHC?

As a result of her injury, Ms. Coughlan is only able to breathe diaphragmatically; she wears a corset during the daytime to keep her chest upright, without which she would suffer shortness of breath. Paralysis of the respiratory muscles means Ms. Coughlan is unable to clear pulmonary secretions through coughing and, therefore, is susceptible to chest infections. (Breathing – LOW)

Ms. Coughlan maintains a healthy BMI and is not at risk of malnutrition. Her swallow is unaffected by the spinal cord injury and she is able to take normal consistency food and fluids. While there is no acute risk of aspiration due to dysphagia, were Ms. Coughlan to aspirate food or fluids, she would be at greater risk of infection due to paralysis of the respiratory muscles. Ms. Coughlan can eat independently using a spoon strapped to her hand, provided the food is cut up for her. Someone needs to hold a cup whilst she is drinking as her hand would spasm if she touched a hot cup. (Nutrition – LOW)

Ms. Coughlan is doubly incontinent and is unable to relieve herself without skilled assistance. She wears continence pads in case of accidents, but these rarely occur. Intermittent catheterisation is performed by nursing auxiliaries every three hours to ensure frequent emptying of the bladder. Fluid intake is carefully managed to prevent overfilling, which can trigger an attack of autonomic dysreflexia, see below. Ms. Coughlan is unable to evacuate her bowels independently and requires the insertion of docusate suppositories and digital removal of faeces (‘manual evacuation’) every second night. A cervical spinal cord injured person has no sensation below the level of the injury, meaning their body cannot tell them in the usual way when they need to use the toilet. All the body can do in such a situation is to trigger its “high alert” system, which it does by dramatically raising the person’s blood pressure. This condition is called autonomic dysreflexia. Episodes are life-threatening and should be treated as a medical emergency. Urinary tract infections, constipation and other similar complications can quickly lead to autonomic episodes if not treated early. Manual evacuation procedures can trigger attacks of autonomic dysreflexia and as such require particular skill. Because of the ongoing interaction between autonomic dysreflexia and bladder/bowels, expert management of Ms. Coughlan’s continence needs is essential. (Continence – HIGH)

Autonomic dysreflexia is a rare condition. Even experienced clinicians do not always recognise the immediate risks to the individual and the need for urgent care. Listen to Tracy’s story of a frightening experience at A&E here.

Ms. Coughlan has no skin sensation or perception of skin damage due to sensory paralysis below the level of her injury. She has high vulnerability to skin breakdown as she is unable to change her position in bed or wheelchair without assistance. Even minimal pressure below the level of the spinal cord injury can quickly lead to an attack of autonomic dysreflexia; choice of clothing fabric and careful positioning are essential. Should skin breakdown occur, risk of autonomic episodes is extremely high. Ms. Coughlan requires repositioning approximately 8 times per day to maintain skin integrity. She is able to tolerate up to 12 hours sitting in a wheelchair so long as regular pressure-relief is afforded. Ms. Coughlan uses a silicon-foam cushion in her wheelchair, but tolerates a standard mattress providing she is turned (side-to-side) 3-times throughout the night (at 0200, 0600 and 0900h). She returns to bed for intermittent catheterization every 3 hours (typically for a 10 min duration), which affords regular pressure relief. Despite pressure-relief strategies and expert management, Ms. Coughlan has suffered pressure ulcers on her bottom. Although these areas are now healed, they remain highly vulnerable to further breakdown. Skin breakdown is extremely dangerous for a spinal cord injured person due to the interaction between compromised skin integrity and autonomic dysreflexia. Should breakdown occur, healing process would be lengthy and complex. Expert management of skin integrity is essential. (Skin, including tissue viability – MODERATE)

Ms. Coughlan is tetraplegic, meaning she is paralysed in the lower part of her body with no movement in her legs, and limited movement in her upper torso. She has no triceps function in her arms. Ms. Coughlan requires a full hoist, operated by 2 people, for all transfers and needs to be turned regularly when in bed. Careful positioning and choice of fabrics are essential to avoid pressure below the level of the spinal cord injury, which could trigger autonomic attack. However, once transferred into a wheelchair Ms. Coughlan has a reasonable amount of independence as she has retained some (very limited) use of her hands with which she can manoeuvre her electric wheelchair. Ms. Coughlan does not require a regular programme of active or passive physiotherapy or exercise, although being assisted to stand twice per week using a special frame helps with maintaining appropriate organ positions and strengthening her bones. The process of standing requires expert supervision due to increased risk of autonomic episodes and hypertension. (Mobility – HIGH)

Ms. Coughlan retains some (very limited) use of her hands with which she can write (with a pen strapped to her hand). She remains completely mentally aware, can access the Internet, converse freely and represent her views articulately. (Communication – NO NEEDS, Cognition – NO NEEDS)

Ms. Coughlan’s medication is routinely prescribed and administered by mouth; Senokot, Calcium and, Iron. She does not require a complex daily regime of medications. Ms. Coughlan requires the insertion of docusate suppositories for bowel management every second day. She has constant neurogenic root pain in her left foot which is not amenable to control by analgesics. In the event of an episode of autonomic dysreflexia Ms. Coughlan requires the emergency administration of nifedipine under the tongue. Skilled anticipation of the need for this medication may be required. Skilled, continuous monitoring of Ms. Coughlan’s condition pre-and post-administration is necessary due to the long-lasting effect of the medication and the increased risk of constipation. Autonomic dsyreflexia exists on a continuum; the risk of attack cannot be permanently recued or removed, although expert care planning can reduce the likelihood and severity of episodes. (Drug Therapies & Medications: Symptom Control – HIGH)

Ms. Coughlan is only able to breathe diaphragmatically and is at medium risk of fainting if her air flow was inhibited. This is managed by wearing a ‘corset’ – abdominal binder – which keeps her chest upright. Ms. Coughlan is at increased risk of fainting when using her standing frame. (Altered States of Consciousness – LOW)

Poikilothermia: Because of her injury Ms. Coughlan is unable to maintain her core body temperature, which is unstable and variable. Ms. Coughlan is able to tell when she is too hot or too cold and therefore proactive monitoring is not required regarding this aspect of her care.

Autonomic dysreflexia (AD) is a unique condition arising from a cervical spinal cord injury, characterised by sudden and extreme hypertension (very high blood pressure associated with sweating and pounding headache) as a result of pain or injury below the spinal injury site (C5/6). Anything that would normally be painful, uncomfortable or physically irritating may cause dysreflexia following spinal cord injury. If left untreated, autonomic dysreflexia can lead to a stroke, epileptic fit or even death and for this reason should always be treated as a medical emergency. It first manifested in Ms. Coughlan ~20 years post-injury, highlighting the idiosyncratic nature of the condition. Episodes were initially very unpredictable – sometimes once per month, at other times several times in a week. They were usually triggered by overfull bowel/manual bowel evacuations or overfull bladder and were controlled by emptying the bladder by intermittent catheterization or by pausing the manual evacuation procedure and elevating her head (to lower blood pressure). On all but one occasion, this management prevented the need for vasodilators (nifedipine). Autonomic dysreflexia exists on a continuum and is highly unpredictable. Mitigating the risk of AD attack requires continuous monitoring, anticipation of symptoms and timely, skilled intervention. An absence of AD attack should not be interpreted as a reduction in the degree of risk or the likelihood of future occurrence. (Other Significant Needs – SEVERE)

Read the National Spinal Injuries Association’s Factsheet on Autonomic Dysreflexia here.

Conclusion

As should be apparent, the type of services Ms. Coughlan requires throughout the 24-hour period relate to the careful management of her physical health, without which she would be at critical risk of cerebral injury and even death.

Ms. Coughlan’s care team requires specialist knowledge of the unique challenges arising from a cervical spinal cord injury, and in particular autonomic dysreflexia.

As Tracey’s story above demonstrates, even experienced A&E clinicians, who see a wide variety of patients every day, have often never encountered autonomic dysreflexia, and are unaware of the critical risks it presents and the need for urgent care.

Owing to the nature of her needs, Ms. Coughlan requires services of a wholly different category than those that an authority whose primary responsibility is to provide social services can reasonably be expected to deliver.

While many sufferers of Dementia, Alzheimer’s and stroke also need full assistance to meet their continence, skin, mobility and medication needs, the nature of the interventions often does not exceed the type of services the Local Authority can reasonably be expected to provide, i.e., routine assistance with eating, drinking, washing, dressing, toileting, moving around safely, maintaining skin integrity and ensuring compliance with routinely prescribed oral medications. The staff meeting needs of this type would not usually require any additional skills or particular training. None of these interactions would require the oversight of a trained nurse, or other similarly skilled professional, due to the risks to the individual should poor care, or difficulty, arise. Were care to be missed for some reason – e.g. non-compliance, staff shortages, emergency – there would be no immediate, urgent risk to the person’s safety, i.e. their life would not be endangered. None of these statements would be true of Ms. Coughlan.

This concludes our examination of the Nature of Ms. Coughlan’s needs. We hope you have found it informative. Next week we shall apply the Intensity, Complexity and Unpredictability characteristics to the information we have gathered about Ms. Coughlan’s daily care requirements to see if any of those criteria are met.

Don’t miss Part 3, “Ancillary and Incidental to the Provision of Accommodation”, coming next week!

February 17, 2021/25 Comments/by Care To Be Different

Care fees, Care system in the UK, NHS Continuing Healthcare

Part 1. But Pamela Coughlan Is Not Really Eligible For CHC, Is She…?

Pamela Coughlan – This three-part series will examine the Coughlan judgment, its implications for long-term care in the community and how an understanding of the clinical facts of the case can assist you in your fight for CHC funding. In today’s blog, we address some common misconceptions about the findings of the Court of Appeal in 1999 and consider Ms. Coughlan’s daily care requirements using the 2018 Decision Support Tool. Don’t forget to look out for Part 2, “Needs of a Wholly Different Category”, in the coming weeks!

Most people who dip their toe into the choppy waters of NHS Continuing Healthcare Funding (CHC) will encounter Pamela Coughlan. The findings of the Court of Appeal in her landmark 1999 case against North & East Devon Health Authority helped clarify the legislation underpinning the division between health and social care in England and Wales. This distinction, and the need for nationally defined criteria, led to the drafting of the National Framework for NHS Continuing Healthcare Funding (CHC) and NHS-funded Nursing Care (FNC), and the development of the CHC Checklist and Decision Support Tool as a means of determining individual eligibility for NHS-funded community care.

You can read the full text of the Court of Appeal’s findings here.

Pamela Coughlan was seriously injured in a road traffic accident in 1971. She sustained a complete C5/6 spinal cord injury; in layman’s terms, her spinal column was severed at the neck. As with the majority of C5/6 spinal cord injured people, Ms. Coughlan was left with complete tetraplegia (with sensory and motor paralysis), meaning she has no sensation or movement below the level of her injury. There is no treatment for a cervical spinal cord injury, resulting in a need for life-long care.

Watch an interview with Pamela Coughlan here.

The Court of Appeal judgment centred on the Health Service’s decision to close the NHS facility where Ms. Coughlan resided, its alleged failure to provide a previously assured “home for life” for Ms. Coughlan, and its attempt to shift the burden of responsibility for her care onto the Local Authority. As social care is means-tested, this would have forced Ms. Coughlan to assume the cost of all her health and social care needs, which had previously been fully funded by the NHS. The Coughlan judgment was, therefore, fundamental in clarifying the legal division between health and social care in England and Wales and remains so to this day.

Read our blogs below for more information about the difference between healthcare and social care needs:

Part 1 – Explaining The Vital Difference Between Social Needs vs Healthcare Needs

Part 2 – Explaining The Vital Difference Between Social Needs vs Healthcare Needs

The importance of the Court of Appeal’s judgement where we are concerned is that it categorised Ms. Coughlan as requiring “services of a wholly different category” than those provided by the Local Authority. This one sentence, easily missed on a quick read through, continues to underpin the eligibility criteria for CHC funding all these years later. Indeed, the National Framework draws Commissioners’ attention to “cases that have indicated circumstances in which eligibility for NHS Continuing Healthcare should have been determined, and where such an outcome would be expected if the same facts were considered in an assessment for NHS Continuing Healthcare under the National Framework (e.g. Coughlan)” (National Framework for CHC, 2018, para. 157).

All this being true, and enshrined in legislation no less, why do we encounter so many people – families and experienced CHC and legal professionals alike – who believe Ms. Coughlan is not, in fact, eligible for CHC funding? Not a week goes by without someone – a family member looking for advice, a CCG Nurse Assessor at an MDT – informing us, with great certainty, that Ms. Coughlan would not be found eligible were she assessed using the Decision Support Tool today. Many people believe that the Health Service’s agreement to fund Ms. Coughlan’s long-term care was, in fact, due to it having reneged on the promise to provide her with a home for life, and not her clinical needs. Resources abound on the internet and we hear from many, many people who have considered Ms. Coughlan’s needs, as described by various sources online, and found them to be equal to or lower than their relative’s. On that basis, they conclude, their relative must also be eligible for CHC funding.

For more information about the Coughlan decision and its relevance today, read our blog:

How relevant is the Coughlan Decision Today?

Sadly, the vast majority of those people will be disappointed and perplexed when their relative is found not eligible for CHC funding by the local Clinical Commissioning Group. They will be even more dismayed when this decision is upheld by an Independent Review Panel at NHS England and may even come to suspect foul-play. On the basis of their understanding of Ms. Coughlan’s needs, the decision makes no sense.

So, why is there such misunderstanding about Ms. Coughlan’s needs and how they relate to the current eligibility criteria for CHC funding? We feel it is important to answer this question and help families determine whether their relative’s needs are comparable to, or in excess of, Ms. Coughlan’s. A significant amount of confusion arises, we believe, as a result of a lack of knowledge of Ms. Coughlan’s actual needs, which are unique and specific to a C5/6 complete spinal cord injury (cervical spine), a misunderstanding of the skill required to meet those needs on a daily basis, an overemphasis on the assessed levels of need in the Decision Support Tool and a misapprehension about the eligibility criteria for CHC funding generally.

IMPORTANT – As the Coughlan Judgment predates the National Framework for CHC funding, there is NO available Decision Support Tool for Ms. Coughlan. The rationale for funding is, therefore, somewhat unclear, save for the Court of Appeal’s statement that she required services of a “wholly different category” to those provided by Social Services. However, Ms. Coughlan has helpfully described her daily care requirements on many occasions over the years and we can reasonably estimate her level of need in each of the twelve care domains using this information.

The following table sets out a summary of Ms. Coughlan’s needs, as described by the Spinal Injury Association, in its 2015 factsheet, ‘Coughlan Compliance’ in Decisions on NHS Continuing Healthcare. In each case, we suggest what the correct level of need would be, using the 2018 Decision Support Tool.

DOMAIN	DESCRIBED NEEDS	SUGGESTED LEVEL OF NEED & RATIONALE
Breathing	Wears a corset during the daytime to keep her chest upright without which she would have had breathing difficulties (shortness of breath as breathing is diaphragmatic only). There were no night care issues regarding her breathing. She was susceptible to chest infections (as paralysis of respiratory muscles prevents coughing to clear pulmonary secretions), which were relatively infrequent and not usually severe.	LOW Episodes of breathlessness that readily respond to management and have no impact on daily living activities.
Nutrition	Can eat independently using a spoon strapped to her hand provided that the food is cut up for her. Someone needs to hold a cup whilst she is drinking as her hand would spasm if she touched a hot cup.	LOW Needs supervision, prompting with meals, or may need feeding and/or a special diet (for example to manage food intolerances/allergies).
Continence	She is doubly incontinent. Needing intermittent catheterization, every 3 hours (performed by nursing auxiliaries) as this proves the most effective way of keeping dry. Fluid intake is carefully managed. She wears incontinence pads in case of leakage, but rarely gets wet. (Thus a well-managed need thereby minimizing risk of skin problems.) Able to travel and stay dry when going out and about (visiting friends etc.); she is accompanied only by a driver/handyman & manages her bladder by restricting fluid intake and using incontinence pads. Required insertion of docusate suppositories and digital removal of faeces (‘manual evacuation’) of her bowels every second night.	HIGH Continence care is problematic and requires timely and skilled intervention, beyond routine care (for example frequent bladder wash outs/irrigation, manual evacuations, frequent re-catheterisation).
Skin (including tissue viability)	Has no skin sensation or perception of skin damage on large areas of her body due to sensory paralysis and has high vulnerability to skin breakdown as is unable to change her position on bed or wheelchair without assistance. She required repositioning approximately 8 times per day to maintain skin integrity. Able to tolerate up to 12 hours sitting in wheelchair so long as pressure-relief is afforded. Uses silicon-foam cushion in wheelchair, but tolerates standard mattress as is turned (side-to-side) 3-times at night (at 0200, 0600 and 0900h). Returning to bed for intermittent catheterization every 3 hours (typically for a 10 min duration) affords pressure relief. Despite pressure-relief strategies, she has had pressure ulcers on her bottom, which although healed have high vulnerability to skin breakdown. Only once did pressure ulcer become infected, necessitating an extended period of bed rest.	MODERATE Risk of skin breakdown which requires preventative intervention several times each day without which skin integrity would break down.
Mobility	Paralysed in the lower part of her body with no movement in her legs, and limited movement in her upper torso. No triceps function in her arms. Requires hoisting (by 2 people) for all transfers and to be turned when in bed; However, once transferred into a wheelchair she has a reasonable amount of independence as she has retains some (very limited) use of her hands with which she can manoeuvre her electric wheelchair.	HIGH Completely unable to weight bear and is unable to assist or cooperate with transfers and/or repositioning. OR Due to risk of physical harm or loss of muscle tone or pain on movement needs careful positioning and is unable to cooperate.
Communication	She retains some (very limited) use of her hands with which she can write (with a pen strapped to her hand). She remains completely mentally aware, can access the Internet, converse freely and represent her views articulately.	NO NEEDS Able to communicate clearly, verbally or non-verbally. Has a good understanding of their primary language. May require translation if English is not their first language.
Psychological & Emotional Needs	No evidence of psychological or emotional needs that impacted on her health and well-being.	NO NEEDS Psychological and emotional needs are not having an impact on their health and well-being.
Cognition	No cognitive impairment that had a significant effect on awareness of risk and delivery of care. She remained completely mentally aware.	NO NEEDS No evidence of impairment, confusion or disorientation.
Behaviour	No behaviour that could be described as challenging.	NO NEEDS No evidence of ‘challenging’ behaviour
Drug Therapies & Medications	All medication is routinely prescribed and administered by mouth; Senokot, Calcium, Iron. Once her condition (tetraplegia) stabilised she did not require an allocated consultant nor require any interventions from ‘specialist’ healthcare professionals. Requires insertion of docusate suppositories for bowel management every second day. She has constant neurogenic root pain in her left foot which does not respond to and is not amenable to control by analgesics. Does not require a regular programme of active or passive physiotherapy or exercise, although being assisted to stand twice per week helps with maintaining appropriate organ positions and strengthening her bones.	HIGH Requires administration and monitoring of medication regime by a registered nurse, carer or care worker specifically trained for the task because there are risks associated with the potential fluctuation of the medical condition or mental state, or risks regarding the effectiveness of the medication or the potential nature or severity of side-effects. However, with such monitoring the condition is usually non-problematic to manage.
Altered States of Consciousness	A medium risk of fainting if air flow was inhibited (managed by wearing a ‘corset’ – abdominal binder).	LOW History of ASC but it is effectively managed and there is a low risk of harm.
Other Significant Needs	Autonomic Dysreflexia (AD) (very high blood pressure associated with sweating and pounding headache) as a result of pain or injury below the spinal injury site (C5/6). Autonomic dysreflexia first manifested ~20 years post-injury. Episodes of AD were very unpredictable – sometimes once per month, at other times several times in a week. There were usually triggered by overfull bowel/manual bowel evacuations or overfull bladder and were controlled by emptying the bladder by intermittent catheterization or by pausing the manual evacuation procedure and elevating her head (to lower blood pressure). On all but one occasion this management prevented the need for vasodilators (nifedipine). Poikilothermia: Because of her injury she was unable to maintain her core body temperature, which was unstable and variable, and consequentially, because of excessive perspiration, she required changes of clothes and the corset up to three times a day. Pamela was able to tell when she was too hot or too cold and therefore proactive monitoring was not required regarding this aspect of her care.	SEVERE Critical risks arising from AD, which is constant, life-threatening and unpredictable. AD attack is caused by noxious stimuli below the level of injury. Expert management of continence, skin integrity and mobility is essential. Mitigating the risk of AD attack requires continuous monitoring, anticipation of symptoms and timely, skilled intervention. An absence of AD attack should not be interpreted as a reduction in the degree of risk or the likelihood of future occurrence.

Click Here to View the 2018 Decision Support Tool

Click here to view the S.I.A.’s factsheet, ‘Coughlan Compliance’ in Decisions on NHS Continuing Healthcare’

Summary of Needs:

Now we have assessed Ms. Coughlan’s level of need in each of the twelve care domains, let’s add them to the matrix in the 2018 Decision Support Tool.

Care Domain	P	S	H	M	L	N
Breathing					X
Nutrition- Food and Drink					X
Continence			X
Skin (including tissue viability)				X
Mobility			X
Communication						X
Psychological and Emotional Needs						X
Cognition						X
Behaviour						X
Drug Therapies and Medication			X
Altered States of Consciousness					X
Other significant care needs		X
Totals		1	3	1	3	4

On our assessment, Ms. Coughlan presents with one SEVERE level of need in Other Significant Needs, three HIGH levels of need in Continence, Mobility and Drug Therapies, one MODERATE level of need in Skin, three LOW levels of need in Breathing, Nutrition and Altered States of Consciousness, and four NO NEEDS in Communication, Psychological & Emotional Needs, Cognition and Behaviour.

Looking solely at the assessed levels of need, it is completely understandable why people believe their relative must also be eligible for CHC funding. Many, many sufferers of Dementia, Alzheimer’s disease, Strokes and other cognitive disorders will be assessed as having a SEVERE level of need in Cognition, a HIGH level of need in Mobility, Communication and Behaviour, or Nutrition, Medication or Skin, along with a number of MODERATE and LOW levels of need in other domains. But despite their assessed levels of need being equal to, or even greater than, those of Pamela Coughlan, they will not be found eligible for CHC funding.

Why? Because, except in the case of one PRIORITY level of need or two SEVERE levels of need, eligibility for CHC funding is not determined by the assessed levels of need, but by the application of the “primary health needs test”, also known as the four Key Characteristics of Nature, Intensity, Complexity and Unpredictability.

Read our series of blogs for more information about the four Key Indicators

PART 1- Looking At The 4 Key Indicators: Unlocking the basics,

PART 2 – Looking At The 4 Key Indicators: Gathering pieces of evidence

PART 3 – Looking At The Four Key Indicators: Completing the Jigsaw

PART 4 – Looking At The Four Key Indicators: Drafting Your Conclusions

Before we can assess Ms. Coughlan’s eligibility for CHC funding, we need to consider the nature, intensity, complexity and unpredictability of her needs, based on the information we have gathered in the twelve care domains. And that’s exactly what we’ll do in part two of this series, Needs of a Wholly Different Category, coming soon!

Don’t miss out! Subscribe to our blog about care fees and NHS Continuing Healthcare and be the first to read them as they are released…

January 27, 2021/5 Comments/by Care To Be Different

NHS Continuing Healthcare

What To Do If You Haven’t Received Your MDT Decision Or Received CHC Funding?

MDT Decision – We have come across several examples recently where individuals have been assessed for NHS Continuing Healthcare Funding, but have either never been told the outcome, or else have been given a positive outcome, but NHS funding was never put in place.

We’ll tell you how to handle these situations, but first the background…

NHS Continuing Healthcare is a package of ongoing care for long-term healthcare needs which is funded solely by the NHS, for an individual, aged 18 or over, who meets certain prescribed criteria due to their intense, complex or unpredictable and challenging healthcare needs, usually arising from a disability, accident or illness.

Getting NHS Continuing Healthcare Funding (CHC) can be a difficult and complex process, which many families find fraught with stress, anxiety and emotion, as they battle with their local NHS Clinical Commissioning Group (CCG) to try and secure free funded NHS care for their spouse or relative.

The bar to achieving CHC Funding is set high and many individuals who apply are turned down as their healthcare needs simply don’t meet the eligibility criteria. But, if successful, it can be a huge relief as the financial burden then passes to the CCG. The CCG then has direct responsibility to pay for the individual’s assessed healthcare needs (including social care needs) as well as their accommodation. In effect, all care fees should now be paid for in full, free of charge, by the NHS.

So, where applicable, accessing CHC Funding is critical as it can save families many thousands of pounds a month in self-funding care fees.

The ultimate need to secure funding is stressful and weighs heavily on most families going through the assessment process. They quickly recognise the vast financial gulf between their relative being found eligible or ineligible for CHC Funding, and the potential risk that their relative could lose their life’s savings or have to sell their home to pay for their care, if unsuccessful.

The Full Assessment at an MDT

The full assessment for CHC Funding is carried out by a Multi-Disciplinary Panel (MDT) whose objective is to make a recommendation as to the individual’s eligibility for CHC. The MDT are obliged to follow the assessment process set out in the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care.

The MDT will consist of at least 2 panel members who are from different healthcare professions; usually one healthcare and one social care professional. Where possible, it is recommended that the MDT assessors have recently been involved in the assessment, treatment or care of the individual, are familiar with their needs, and have been trained in the National Framework and how to conduct robust and fair assessments.

The MDT assessors will collate and review the relevant information on the individual’s health and social care needs (usually by reference to care home, GP and hospital records).

The MDT assessment is intended to be ‘person centric’ and put the individual at the heart of the assessment process. It is important that their needs and views (or those of their appointed family or professional advocate) are taken into consideration and not ignored or dismissed out of hand. The family representatives must be consulted and invited to attend the MDT; failure to do so is an abuse of process and immediate grounds for appeal.

The assessors will review the evidence and complete a picture of the individual’s healthcare needs using the Decision Support Tool (DST).

The DST is simply a means of collating and consolidating the evidence in a practical written format in conjunction with predetermined ‘descriptors’ as to levels of need. It is not the decision itself.

Using the evidence set out in the DST, the MDT assessors will then make a professional judgment about whether the individual meets the eligibility for NHS Continuing Healthcare.

Based on their findings and judgment, they will then submit the DST and their conclusions back to the CCG with a recommendation as to CHC Funding with their reasons (‘rationale’).

Ultimately, the CCGs are responsible for decision-making as to eligibility for CHC, which should be based on the MDT’s recommendations. After all, their appointed assessors have had the benefit of spending time with the individual and their family representatives, and reviewing, and (hopefully) carefully listening to their needs. So, unless the MDT assessors’ recommendation is perverse and against the run of evidence (or more information is needed), you would usually expect the CCG to follow the MDT’s recommendations.

The National Framework states that: “Only in exceptional circumstances, and for clearly articulated reasons, should the multidisciplinary team’s recommendation not be followed.”

But beware! Just because the MDT have given the family positive encouragement and have recommended CHC Funding, it isn’t guaranteed. Unfortunately, we have noted an increase in cases where CCGs have taken a contrary position to their assessors’ recommendations for CHC.

Once the CCG has made its decision as to eligibility, the outcome should be notified in writing to the individual as soon as possible (usually within 48 hours/2 working days) of receiving the MDT’s recommendations. In addition, for transparency, the individual should be given a copy of the completed DST, the rationale for the outcome decision, and where known, an indication of the proposed care package and what the next steps are.

What happens if you don’t receive the decision outcome letter?

Much thought, time and preparation is needed if families (or their appointed advocates) are going to represent their relative at an MDT. Good preparation and planning is essential. As stated above, the outcome is critical in terms of who pays for care. The MDT is often the first real chance of securing CHC, and a good showing at the MDT is essential for early success.

We recently heard of a scenario where one family had their MDT about 2 years ago and the assessors indicated they would be recommending CHC Funding, but despite numerous chasers, are still waiting for the CCG’s outcome letter to arrive. So, having pursued their relative’s complex claim for much needed CHC at an intense MDT, spent hours preparing and reviewing the notes and records, rehearsing the evidence and their arguments for the assessors, having sleepless nights, and suffering with anxiety knowing how important the outcome is, it seems grossly unfair and unreasonable that the outcome decision still remains unknown. Understandably, this has caused distress and left them hugely frustrated.

If you don’t hear anything after 2 days, you must chase the CCG. Do not give up!

If your relative is found eligible for CHC, the CCG should arrange to take over payment of the care fees with immediate effect, wherever that care is provided, whether at home, in a care home, or other care facility. The CCG will contact the care provider and enter into a a contract to arrange payment. So, it is in your relative’s interests to chase up this decision. Why wait longer than necessary? Don’t be afraid of chasing frequently once the 2 day period has elapsed. If you don’t, your relative could miss out on vital care or end up paying for their own care unnecessarily!

If appropriate, lodge a formal complaint immediately with the CCG and copy in the Chief Executive.

What if CHC is awarded but not paid?

It does happen that a CCG will ratify the MDT’s decision and confirm that the individual is eligible for CHC Funding, but then omit to set payment in motion or implement the assessed package of care. As above, it could mean that your relative misses out on essential care (eg if living at home) or ends up being chased by the care home for payment instead, risking eviction.

If a relative is being cared for at home, that can force family members to give up work to look after them or paying for additional carers to come in to help out. Looking after a relative at home with complex and challenging needs can be extremely difficult and tiring, not to mention challenging.

So, be sure to chase up payment and don’t just assume the CCG will pay on time! Things can slip through the net. Although rare, it does happen, and you need to be alert to make sure it doesn’t happen to your relative.

If you are looking after a relative who hasn’t received their CHC care then consider making a claim against the CCG for restitution.

The NHS Continuing Healthcare Refreshed Redress Guidance will assist you if you’ve suffered any financial loss (e.g. taken time off work and lost earnings), been caused distress, had to pay for professional carers to come in and do the job the CCG were supposed to action and pay for. Keep a note of all additional time you’ve spent, and all invoices and receipts. You may well be able to claim them back on account of their maladministration. Keeping evidence of your expenditure and loss is vital.

The Refreshed Redress Guidance maintains the long-established principle that “where maladministration has resulted in financial injustice, the principle of redress should generally be to return individuals to the position they would have been in but for the maladministration which occurred.”

Before you embark on a claim of this nature, we recommend that you seek professional advice to assess the merits of your claim and to maximise your losses. If you need help, visit our 1-2-1 Support page.

Our Care To Be Different website is packed full of helpful articles to give you advice and assistance at every stage of your assessment for CHC. Here’s a small selection of related articles that you might find helpful:

Preparing for the Multi-Disciplinary Team Assessment

Learning valuable lessons prior to your MDT Assessment and how to avoid pitfalls

What to do if you’ve been excluded from the MDT Assessment?

Retrospective Review Claims – Everything You Need To Know About Claiming Interest

Paying Unfair Top-Up Fees? Latest Developments Will Send Shockwaves To Care Homes

Problems with care home records? Mind your language…

Let us know if you’ve ever had to wait an inordinate time to receive your positive outcome letter following a successful MDT, or never received funding after an award was made in your relative’s favour…

January 21, 2021/7 Comments/by Care To Be Different

NHS Continuing Healthcare

Who is entitled to CHC?

We tend to think of the elderly and frail in care homes as being the most likely entitled to CHC or NHS Continuing Healthcare Funding, but young adults may be equally entitled to this available NHS pot of free funded care. Too often, young adults fall off the radar and can be overlooked when it comes to NHS Continuing Healthcare Funding. In practice, it could mean that many eligible young individuals are missing out on a package of free funded care that is available to pay for all their daily healthcare needs.

Remember the underlying foundation of our NHS health system is that ‘care is free at the point of need’. So, where there is a health need, care should be provided by the NHS free of charge. That is the basic tenet of our health system, but in practice, accessing free care for long-term healthcare needs is not as easy as it sounds.

NHS Continuing Healthcare Funding (often referred to as ‘CHC’ for short) is a free package of care funded by the NHS for anyone over the age of 18 who has a ‘primary health need’ ie the main reason for their care is for healthcare reasons rather than social care. It is often forgotten, that CHC can apply to young adults, too, not just the elderly and infirm with chronic and challenging long-term illnesses, advanced Dementia and Alzheimer’s.

CHC Funding is available to meet an individual’s health and associated social care needs that have arisen as a result of disability, accident or illness. As long as the individual is 18 or over, age is not the primary concern. CHC is about health needs.

So, for example, a young adult in their late teens/twenties or even thirties may equally qualify for CHC Funding if they have a primary health need – often thought of as being needs akin to round-the-clock 24 hour nursing care – and which could arise from birth or early childhood. Unfortunately, disability, accident or illness can strike at any time, perhaps caused as a result of:

Severe life-changing injuries from a road traffic accident or accident at work
A rare genetic condition
A muscle disorder
A respiratory disorder
A degenerative brain condition
Sudden stroke leading to paralysis
Mental illness

If the young adult’s needs are intense, complex or unpredictable they may demonstrate a primary health need and qualify for CHC Funding.

A ‘primary health need’ is a somewhat artificial concept developed by the Secretary of State and is used to help determine whether an individual is eligible for CHC Funding – ie funded care provided by the NHS. In default of meeting the eligibility criteria for CHC, the individual may be passed over to their Local Authority to see if they qualify for social care instead.

The difference is that social care is means-tested, and so, if the individual has more than £23,250 in savings or capital – which includes the value of their home – they will have to pay for all their care, and care is expensive. However, in reality, most young adults who are eligible for CHC Funding are likely to be in receipt of benefits, and if means-tested, may be at risk of having to make a contribution to the cost of care from those benefits. This could be to wipe out or substantially erode their benefits. In many of these cases where CHC is applicable, a jointly funded package of care is agreed between the NHS Clinical Commissioning Group and the Local Authority.

Accessing CHC Funding from the NHS can therefore save a young adult and their family many thousands of pounds a month in care fees if they can show a primary health need and qualify for funding.

CHC Funding includes the cost of healthcare, social care and accommodation (if that is part of the overall need). So, if a young adult requires 24 hour care, that can save a lifetime’s fortune in ongoing weekly care fees.

Important: It doesn’t matter where the care is provided to qualify for CHC Funding. So, if the young adult is cared for in their own home, parent’s home or a care facility, then they should still be eligible for funding – as long as they can meet the eligibility criteria and show a primary health need.

Assessment for CHC Funding (ie a primary health need) is carried out pursuant to the guidance contained in the ‘rule book’, known as the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care. This is a national set of guidance applied by all Clinical Commissioning Groups (CCGs) when assessing whether the young adult has a primary health need. The trouble, as we know, is that the National Framework isn’t applied uniformly across the country, leading to a disparity in outcomes as to who is most likely/unlikely to be awarded CHC by reference to where you live, rather than being judged on your particular needs!

It is therefore essential that you read and understand this guidance as best you can, as these are the rules and tools of the process by which CCGs are supposed to conduct fair and robust assessments. You cannot know your rights and support your relative’s claim if you are not at least familiar with the process, how it should work, what to expect at an assessment, who attends from the CCG, who can represent your young relative, and what evidence of need should be taken into consideration when making a decision as to their funding.

If representing your adult child or young relative at an assessment, could you spot an abuse of process? What would you do about it even if you did? To whom would you complain, how and when?

If undertaking an assessment on behalf of a young adult or relative, you really need to understand the National Framework, as it is complex and primarily designed to assist the CCG’s appointed assessors, rather than young adult being assessed – despite the Framework intending to put them at the centre of the process.

Quite understandably, many families going through the assessment or review process find it overwhelming and emotionally fraught as they fight for their child’s rights for CHC Funding. There is expert help available at all stages of the process. If you require specialist help, we recommend you visit our 1-2-1 Support page. For young adults with complex needs, you may be pleased to hear of a unique service offered at: https://www.farleydwek.com/young-adults-with-complex-needs/

The assessment for CHC Funding usually starts with a Checklist screening assessment to see if the individual can move on to a full assessment.

The full assessment is conducted by a Multi-Disciplinary Team at a meeting. The MDT should consist of at least 2 professionals from different healthcare professions (or 1 healthcare professional and 1 social care worker) who are familiar with the individual’s needs, have been involved in their care and have been trained in the National Framework. The MDT panel assess eligibility for CHC by reference to the Decision Support Tool. At the end of the MDT assessment, the assessors will make a recommendation to the local CCG as to eligibility for CHC Funding. The CCG will usually follow the MDT’s recommendations for funding.

According to paragraph 55 of the National Framework:

“55. An individual has a primary health need if, having taken account of all their needs (following completion of the Decision Support Tool), it can be said that the main aspects or majority part of the care they require is focused on addressing and/or preventing health needs. Having a primary health need is not about the reason why an individual requires care or support, nor is it based on their diagnosis; it is about the level and type of their overall actual day-to-day care needs taken in their totality.”

In summary, there is a common misconception that CHC is just for the elderly. It isn’t. As we have shown, there could be numerous health conditions in young adults which would be equally deserving of CHC Funding. If you are a family with a young adult in need of care, consider applying to your local CCG for an immediate assessment.

We would also welcome comments from families who have been through the process and to share your experiences below with others to give them encouragement, hope and support. Are there any tips you can share to help them secure CHC for their relative or child?

Our Care To Be Different website provides many of the answers to your problems and questions. Read the vast array of articles about CHC Funding and tap into our resources free of charge. Learn from other families who have had to fight the NHS for funding for their adult child.

If you want professional support and advocacy help at an assessment or MDT panel meeting, visit our 1-2-1 Support page.

January 11, 2021/2 Comments/by Care To Be Different

NHS Continuing Healthcare

2020 Year In Review

2020 Year In Review: Care To Be Different remains the No.1 website for free information and resources relating to NHS Continuing Healthcare Funding (CHC) – free NHS funding for individuals aged 18 and over, with complex, intense or unpredictable long-term healthcare needs.

Looking back over 2020, it has been an extremely difficult and challenging year for everyone going through the CHC funding process. Government measures to try and contain COVID placed CHC assessments and appeals on hold between March and August. Care homes closed their doors to visitors and families in an effort to avoid spreading the virus to those most vulnerable in society. Patients and their families were denied even the basic human touch of a held hand or embrace, as care homes entered into lockdown for many months. Government emergency funding was put in place to assist with care needs and rehabilitation for patients being rapidly discharged from hospital to free up beds. Thankfully, the Government mandated Clinical Commissioning Groups to re-open for CHC business and catch up with the back log of assessments and appeals starting from 1^st September. We have since noticed a surge in CHC activity as CCGs take action to make up for lost time and press ahead with new assessments.

At this time of year, we wanted to express our thanks to all our readers and contributors for your continued interest in our website and for openly sharing your personal experiences to help others facing similar problems when fighting the NHS for vital free CHC Funding.

Despite the COVID pandemic, we have been able to keep our readers up to date with developments and changes to NHS funding throughout the year and respond to your enquiries. Reflecting on 2020, Care To Be Different have produced a substantive 49 blogs, highlighting some of the issues and scandals surrounding NHS Continuing Healthcare Funding. Our articles are crammed with useful guidance and tips to help you battle the NHS to get CHC Funding for your spouse, relative, friend or client.

It’s been a tough choice, this year, but here are our top awards for 2020:

January: Most Checklisted

Winner: Understanding the Checklist Assessment

The Checklist assessment is a preliminary screening tool used by the NHS to help practitioners assess a basic level of need and determine whether an individual is eligible to move forward to a full assessment for NHS Continuing Healthcare Funding. Most assessments for CHC start with the Checklist. In this blog you will learn about the Checklist assessment, how to start the process, who arranges the Checklist, who can attend, possible outcomes and much more. Preparation at this initial stage of the assessment process is essential.

Runner up: Tackling consent: Keeping control if your relative lacks mental capacity

Learn more about where the checklist assessment takes place, how to start the process,

February: Most Common

Winner: Getting through the Checklist assessment – avoid these common mistakes!

Following on from January’s blog, read about the 11 most frequent mistakes made when undergoing the Checklist assessment and ensure you know your rights so that you don’t fail at the first hurdle and can progress onto a full assessment with a Multi-Disciplinary Team.

Runner up: Battling NHS delays – join the queue!

March: Most Excluded

Winner: What to do if you’ve been excluded from the MDT Assessment?

As your relative’s personal representative or appointed advocate, you are entitled to attend the Multi-Disciplinary Team assessment (MDT). The CCG’s appointed assessors will complete the Decision Support Tool and then make a recommendation to the CCG as to whether CHC Funding should be awarded or not. This is a critical step in the assessment process and under no circumstances should you be excluded from the MDT. Read our case study and learn how to handle any such blatant abuse of process contrary to the National Framework.

Runner up: Is your relative claiming their full entitlement to benefits?

April: Most Exclusive

Winner: An exclusive Q & A interview with an IRP Chair – a rare insight into conducting your appeal and knowing what to expect on the day.

It does what it says on the tin. CTBD are privileged to have been able to interview an NHS England Independent Review Panel Chair who shares some tips, lessons and guidance for all those making an appeal. The IRP is often thought of as your ‘last chance saloon’- the equivalent of the Supreme Court. This exclusive blog follows a question and answer format and covers 24 issues that families frequently ask before attending an IRP panel. This blog offers a rare insight and is recommended if you have an appeal pending.

Runner up: Part 1. Explaining The Vital Difference Between Social Needs vs Healthcare Needs. (Don’t forget to check out Part 2 on our website).

May: Best Managed

Winner: Using the ‘Well-Managed Need’ Principle To Your Advantage

CTBD explore this difficult and highly controversial topic which is often misunderstood and misapplied by both CCGs and families alike. Learn how to combat the CCG’s arguments and use the National Framework for NHS Continuing Healthcare to argue the case that ‘a well-managed need is still a need’.

Runner up: PART 1 – Looking At The 4 Key Indicators: Unlocking the Basics (plus take a look at Parts 2, 3 & 4!)

June: Most Problematic

Winner: Problems with care home records? Mind your language…

Read about why good record keeping is of vital assistance if you are going to have the best chance of succeeding with your relative’s CHC claim. MDT panels often rely on the care home records as part of their decision-making process as to eligibility for CHC Funding. Inaccurate, incorrect or missing entries can paint an entirely different picture of the level of need and affect the outcome decision. Check the care home records frequently to ensure that the daily entries recorded accurately reflect your relative’s healthcare read needs.

Runner up: COVID: How Will Backlogs Impact on NHS Continuing Healthcare Funding?

July: Most Unlawful

Winner: Have you been coerced into paying unlawful care home top-up fees?

Can care homes lawfully charge top-up fees if your relative has been awarded CHC Funding? Top-up fees are the exception and not the general rule, should always involve informed consent, be voluntary, optional, affordable and transparent. Read our excellent blog on this complex subject and discover whether your relative may have been unlawfully charged care home fees and what they can do about it. Explore the issues and read our top 10 tips.

Runner up: Self-defence – Protect yourself and make a Lasting Power of Attorney

August: Most Persistent

Winner: Perseverance and stubbornness pays off, so don’t give up!

Based on a testimonial, read an inspiring story from one contributor and how she successfully fought for her relative’s CHC funding, and through sheer stubbornness and refusal to take ‘no’ for an answer, took her case all the way to appeal at NHS England and won.

Runner up: 10 Common Issues Affecting Families seeking NHS Continuing Healthcare Funding

September: Best Prepared

Winner: Essential Preparation and Planning As CCGs Restart Assessments and Appeals From 01/09/20

The Covid pandemic placed inevitable restrictions on Clinical Commissioning Groups and with it the inability to conduct face-to-face assessments and appeals between 19^th March to 31st August 2020 as key staff were diverted to the frontline to help with patient discharge from hospitals. Most CCGs were closed for CHC ‘business’ save for a handful of appeal panels that were able to convene by remote video. However, with effect from 1 September 2020 it was back to usual business. Read about the latest transitioning provisions and our recommendations to prepare your case whilst CCGs catch up with their backlogs.

Runner up: Don’t Miss Out On Funded Nursing Care

October: Most Confused

Winner: Confused? Read This Before You Start Your Retrospective Appeal for CHC Funding…

If you’ve been turned down for CHC Funding you only have 6 months to lodge your appeal. This time will pass quickly and there is much work to be done when preparing your detailed appeal submissions. Early preparation is paramount and vital to success. Read our informative blog on the appeal process and get our top 10 tips to help you succeed whether at Local Resolution Meeting or an NHS England Independent Review Panel.

Runner up: Rationing NHS Continuing Healthcare Funding – The ‘NHS’s Best Kept Secret’

November: Most Interesting

Winner: Retrospective Review Claims – Everything You Need To Know About Claiming Interest

If your relative has been successful in retrospectively claiming CHC Funding, they are automatically entitled to interest on their restitution sum awarded. Read this excellent article which focusses on your entitlement to interest, how to calculate it and check that the CCGs are paying you the correct amount using the most appropriate rate of interest.

Runner up: Discharged from hospital to a care home? Is your relative getting their entitlement to 6 weeks’ free care?

December: Most Accessible

Winner: Denied access because you don’t have the necessary legal authority to act for your relative?

When pursuing a claim for CHC Funding as your relative’s representative, it is essential that they give you (or you obtain) the appropriate legal authority to act on their behalf. Correct legal authority, such as a Lasting Power of Attorney or Will, confers absolute legal power to the designated recipient to act when needed and make important decisions in a timely manner. In this blog, we explore various scenarios where such authority is necessary to give legal standing to act. If you have any doubts whether there is legal authority in place, read this article.

Runner up: Unacceptable: “Well, elderly people do fall, don’t they…”

Finally, as 2020 closes, we wish all our readers and contributors a happy, healthy and prosperous new year and all the best for 2021. Keep safe.

You can help Care To Be Different by:

Spreading the word and tell others about Care To Be Different.

Searching our website with key terms or phrases to access lots more free information.

Sharing your experiences with others and leave your comments below…

“This is where the support from CTBD came in. Although we always believed he was eligible for full funding, the information from articles on the website and hints given on dealing with these assessments were vital and gave us the confidence to proceed. We had also purchased their book “How To Get The NHS To Pay For Care” which gave invaluable advice.” [Anonymous]

December 18, 2020/2 Comments/by Care To Be Different

Care system in the UK, NHS Continuing Healthcare, Personal stories - care fees

Sick pensioners threaten to sue Health Secretary Matt Hancock and the NHS for £5BILLION

If you missed this article in last week’s Daily Express (26th October), you can read it in full below:

Sick pensioners threaten to sue Health Secretary Matt Hancock and the NHS for £5BILLION

“Legal documents have been sent to Health Secretary Matt Hancock and the NHS giving them 14 days to give very sick pensioners the free healthcare they have a right to or face a £5bn lawsuit. The move is the first in a campaign fighting to overturn the unfairness which sees elderly people bankrupted to pay for NHS care – which they have paid for via their taxes all their lives.

The notices – known as a Judicial Review pre-action protocol pre-claim letter – were sent to Mr Hancock and the NHS by Rear Admiral Philip Mathias, who is leading the fight after winning back £200,000 wrongly charged by the NHS for the care of his late mother. The Department of Health and Social Care and the NHS now have two weeks to promise a new fairer plan or the Judicial Review in the High Court will go ahead.

And if successful, the action could cost the health service £5bn in paid-back medical fees.

The lawfulness of the Continuing Healthcare National Framework is being challenged as the scandal of NHS Continuing Healthcare (CHC) rationing grows.

Tens of thousands of eligible pensioners – and other sick and disabled adults – are being rejected by their local Clinical Commissioning Groups for healthcare costs despite suffering from awful health problems.

Many of these people are suffering from dementia or Alzheimers and the vast majority of them are homeowners – so they can be forced to sell their properties to pay the bills.

Former submariner Admiral Mathias, who was in charge of Britain’s nuclear policy at the Ministry of Defence before his retirement, said: “In terms of the sheer scale of this scandal, measured by the significant number of old, ill and vulnerable people adversely affected and the huge level of unlawful financial deprivation, this is very possibly one of the biggest government scandals of modern times.

“The aim of this legal action is to force the Government and NHS England to stop Clinical Commissioning Groups breaking the law and to make sure redress is provided to those who have been unlawfully denied CHC funding.”

On his Crowd Justice page, Admiral Mathias highlights the plight of an elderly patient plagued with health conditions who was denied CHC funding.

The severely ill man suffered from Parkinson’s disease, ulcerative colitis, double incontinence, chronic kidney disease and was unable to move or feed himself.

But his healthcare needs were deemed insufficient to qualify for CHC payments.

The day after that decision was confirmed at an appeal, he died weighing 45kg.

Caroline Abrahams, the charity director at Age UK said: “It’s very sad that things that have reached the point at which administration of the Continuing Health Care scheme is being legally challenged.

“But at Age UK we too have heard too many stories of older people seemingly denied their rights and they and their families having to battle for months or even years to obtain redress.”

“Continuing Health Care exists to help older people with the most serious needs and that’s why it is especially important that it is properly resourced and operates in a transparent and fair way.

“We really do hope that this legal action leads to improvements, so that older people living with complex health problems can be confident of getting the support they desperately need, and so they and their loved ones are not faced with sky high care bills that legally ought to be being met by the NHS.”

Under national CHC rules, elderly people with significant health problems should have their care and nursing fees paid in full by the NHS, provided their condition is the main reason they need help.

This is different to the means-tested adult social care funded by councils.

But the process is complicated, bureaucratic and local clinical commissioning groups (CCG) have been accused of “rationing” successful applications so they do not have to pay out.

There is a 20-fold variation in the chances of securing CHC funding between different NHS clinical commissioning groups, recent research found.

The Daily Express has led a crusade against the refusal to fund the costs which leave elderly people with “catastrophic” bills.

The first £30,000 needed for the court action was raised in a matter of days.

Campaigners are now raising £250,000 for the rest of the legal fees.

The total was boosted earlier this month by a £1,000 anonymous donation from a supporter who wrote; ‘shame on the liars and cheats, who tried to swindle an old man, so ill, he could do NOTHING for himself….. The system, and more so the supposed “caring professionals ” concerned, are corrupt to the core….

Dan Harbour, the managing director of the independent advice group Beacon CHC, said: “The public support for Philip Mathias’ campaign reflects the strong feelings about the CHC system that we encounter every day from clients who turn to us for help.

“Rear Admiral Mathias is passionate about this issue, and I have no doubt he’ll be an effective representative for those who’ve already donated to support the legal challenge.”

To get NHS CHC, you must have “a complex medical condition with substantial, ongoing care needs”, and you have to be assessed as needing it.

In England & Wales, this assessment is carried out by the local CCG.

But worried families complain that the criteria is too strict and often changed.

They say obviously very sick people – especially if they are homeowners – are rejected by a NHS they have paid into all their lives.

The papers – drawn up by top law firm Hopkin Murray Beskine and delivered to the Government’s legal department in Westminster – say the evidence is overwhelming that consistent and lawful CHC funding decisions are not being made.

They describe the postcode lottery of positive eligibility decisions as “startling”.

And despite a growing older population, since 2015 there has also been a sharp decline in the number of people qualifying for the payments.

This “defies any logical explanation save for a desire to save money which cannot be a lawful reason to deny a person the free NHS care to which they are entitled”, the papers say.

The Department of Health and Social Care would not comment on the legal action.

COMMENT By Andrew Farley

There is almost a complete lack of awareness of the existence of CHC and for those who have heard about it an inability to navigate the complexities of the process alone.

Clinical Commissioning Groups at local hospitals are often very inconsistent in their interpretation of the CHC regulations.

This leads to an unacceptable level of subjectivity in the way in which the National Framework is applied and often there is a complete disregard for the law.

There is also considerable evidence of a “postcode lottery” where the eligibility criteria is applied more harshly in some areas than others.

The fact that the NHS are judge, jury and gatekeeper is blatantly wrong – a lot more independence is required.

In any other legal situation, this would be considered to be a clear conflict of interest.

We know that many thousands of people have been inappropriately denied NHS CHC Funding.

The Government has provided significant support to those who have been discharged from hospital requiring ongoing care during the current pandemic.

But there are now 25,000 people who all need to be assessed for care funding and the delays and process issues which are already endemic in the system will be further compounded by the situation.

Many reviews have been found to be inadequate due to a failure by the Assessors to consider available evidence either properly at all.

There are a significant number of appeals presented to NHS England each year resulting in long delays to have cases reviewed by an Independent Review Panel, the success rate at which is very low.

The Health Service Ombudsman also seems to have very limited scope in relation to complaints about CHC funding.

As long as the CCG has followed the correct process, there is a reluctance to uphold a complaint even when the clinical decision is deeply flawed.

And the Ombudsman’s Clinical Advisors are generally individuals employed by the NHS Continuing Healthcare teams, being the very organisations against whom complaints are being made.

The NHS has been told that it has to make £855m worth of efficiency savings in relation to CHC by 2021.

The only way of achieving this is to reduce people’s packages of care and/or to withdraw funding from those who continue to be entitled to it.

This is further compounded by arbitrary caps on care fees which are imposed by various CCGs.

This requires families to top up the shortfall between what is funded and what is being charged by the care provider and is illegal.

Many of the families we speak to have relatives who have been funded for several years, but are now being reassessed and funding is withdrawn.

This is despite the fact that they continue to deteriorate and there has been no improvement in their condition, or reduction in the care required.

Families understandably struggle to rationalise the justification for this which in many cases is blatantly wrong.

The whole CHC system is unlawful and not fit for purpose.

• Andrew Farley is a lawyer and the founder of Continuing Healthcare support group Care to be Different

Case study

On the day of her mother’s funeral, Margaret Kemp received a bill for £63,178.20p – this was on top of £110,000 already paid for supposedly free NHS care.

The 95-year-old mother of two, also called Margaret, was a former district nurse but died penniless after working for and paying into the NHS all her life.

Despite suffering from dementia and host of other severe health problems, the Surrey Clinical Commissioning Group did not class her needs as ‘primary’.

This meant her daughters were left with no choice but to sell the home their mum loved to pay the nursing home and healthcare bills.

Miss Kemp, who lives in Osgathorpe, Leicester, said: “It’s criminal, unlawful and immoral the way they treat dementia sufferers and other elderly people whose poor health means they need care and treatment.

“Dementia robs a person of their dignity; the State rapes them of their assets.

“My mum did the right thing all her life. My father was a veteran of the D-Day landings and they were typical of their generation as they lived within their means.

“They never had a credit card, didn’t go on foreign holidays or went to restaurants and always ‘made do and mended’.

“They scrimped and saved and eventually bought their council house which was their pride and joy.

“My dad died in 2013, he had prostate cancer and mum nursed him at home for as long as possible and then he spent his final days in a hospice. All this was covered by the NHS.”

In 2016, aged 92, Mrs Kemp senior fell and broke her hip. She was admitted to hospital but never walked again.

There was also a diagnosis of dementia which was exacerbated by the anaesthetic and it became clear she could not live alone anymore.

“When the care professionals got involved, one of the first questions I was asked was ‘is your mum a homeowner’,” said Miss Kemp.

“My mum could not stand, could not walk, did not know where she was, where her husband was and was distressed and highly anxious.

“Added to this, she could not remember she could not walk so kept trying to stand up and more falls ensued. She needed 24/7 care as she was a danger to herself.

“But every single Continuing Healthcare assessment minimised her problems, every “need” was ignored.

“The CHC Assessors would spend a couple of minutes with her and decide she was mildly confused.

“This was despite being in front of a woman who thought she was on a farm in Ireland, could not recognise her daughters, had to be hoisted everywhere, could not move due to a risk of falls and was on all kinds of medication.

“Her skin was like tissue paper, she weighed seven stone and was covered in bruises.

She was awarded Funded Nursing Care at £717.43 per month, but the Surrey nursing home fees were £5,300.

“Then in March 2019, mum was diagnosed with pneumonia and we were told to expect the worse.

“We were asked whether we wanted her to be transferred to the hospital but we wanted her to pass away peacefully in her nursing home, not in a busy A&E and her doctor agreed.

“I asked for a Fast Track CHC to be initiated on March 2 and asked again on Monday 4.

“On March 5, I bumped into a CHC Assessor at the home. Mum had pneumonia, not eating or drinking, we were at a vigil at her bedside and she weighed 6½ stone.

“A report came back to say she only needed social care.

Apparently the assessor thought she was “responding to antibiotics” which meant she could open her eyes slightly.

“I can’t express my anger and frustration. They hadn’t reached the limit of what her house would give them when it would be sold, and they just disregarded her needs.

“I complained and they did another Decisional Support Tool a few months later, she qualified but when the report went to Surrey Clinical Commissioning Group her scores were lowered and there was to be no other help.”

If you are in the process of seeking NHS Continuing Healthcare Funding for your relative, you don’t have to fight this battle alone. Read our book for lots of handy tips and help.

October 29, 2020/1 Comment/by Care To Be Different

NHS Continuing Healthcare

Rationing NHS Continuing Healthcare Funding – The ‘NHS’s Best Kept Secret’

Rationing NHS Continuing Healthcare Funding: Retired Admiral Philip Mathias, former submarine Commander and director of nuclear policy at the Ministry of Defence, is rallying public support for his ongoing £5bn legal battle against the Government and NHS England. He is seeking to hold them to account on behalf of thousands of individuals who have been wrongly denied CHC funding and forced to pay for their care unnecessarily – even having to sell their home – as a result of flawed or unlawful NHS assessments.

Admiral Mathias’ story starts after he successfully fought a lengthy and arduous 2 year battle against Wiltshire Clinical Commissioning Group and retrospectively recovered £200,000 of nursing home fees that his 90 year old father paid for his late mother’s care whilst she had dementia and other complex medical conditions. His website, press articles and interviews recant the huge amount of complex analysis needed to process his successful retrospective claim for wrongfully paid care fees, with over one hundred letters written, 3 meetings and more than 300 hours spent battling red tape. He states the “CCG did everything possible to avoid making an eligibility decision. This included ignoring and grossly distorting the evidence contained in her care records.”

NHS Continuing Healthcare Funding (often referred to as ‘CHC’) is a package of care paid for in full, free of charge, and is not means-tested, and covers the cost of care of an individual with a ‘primary health need’ ie the main reason for their care is due to complex health needs which are over and above what a local authority are legally obliged to pay.

Admiral Mathias is now spearheading a fundraising campaign to expose this national scandal by mounting a legal challenge against the Government and the NHS, whom he believes have unfairly denied thousands of elderly, ill and vulnerable individuals – the most vulnerable in our society – of their entitlement to NHS Continuing Healthcare Funding.

Quoting from his fundraising page:

“The initial basis of the legal challenge is:

The Secretary of State for Health and Social Care, together with NHS England, has unlawfully failed to ensure that Clinical Commissioning Group decisions as to eligibility for Continuing Healthcare funding are made in a consistent, rational and lawful manner and that the arbitrary and inconsistent decisions as to eligibility for NHS Continuing Healthcare leads to an unacceptable risk of unlawfulness.”

On the 1^st October 2020, the Daily Telegraph featured an article headed:

“Former head of Britain’s nuclear deterrent to sue Matt Hancock over £5bn care ‘scandal’.

The former head of Britain’s nuclear deterrent is suing Matt Hancock to force the NHS to pay for elderly patients’ long-term health costs.

If successful, the threatened judicial review by Rear Admiral Philip Mathias could cost the health service £5 billion in paid back medical fees.

The case concerns the failure by local NHS bosses to pay for the continuing healthcare (CHC) of tens of thousands of eligible patients a year.

Click to read the full article:

https://www.telegraph.co.uk/news/2020/09/30/former-head-britains-nuclear-deterrent-sue-matt-hancock-force1/

Admiral Mathias’ campaign seeks to highlight the issues of unfair rationing of CHC funding by the NHS, its unlawful malpractice – refusing or withdrawing CHC funding for those who were evidently eligible – and raising awareness of the ‘postcode lottery’ – the huge variance across the country as to who is more or less likely to be awarded CHC funding depending on where you live. Furthermore, Admiral Mathias points out that since 2015, the number of people being found eligible for CHC has been consistently reducing – which goes entirely against the grain in a country which has an ageing population! Surely, over time, more people should become eligible for CHC funding, not less? Why is this trend contrary to expectations? Because it’s all to do with money and the NHS needing to save £855m by 2021! As Mathias puts it, quite possibly, this is the biggest financial scandal in NHS history!

Admiral Mathias has recently reappeared on BBC TV on 7^th October 2020, when he was interviewed by Victoria Derbyshire. You can watch the full interview again here: https://www.youtube.com/watch?v=Fc3fsSEnEBo

However, these issues are not entirely new as our readers will know from their own personal experiences.

Since Care To Be Different’s inception in 2010, we have been at the forefront of raising nationwide awareness of the public’s rights to request a CHC assessments whether for a spouse, partner, relative or friend – where there is a primary health need. Our website provides lots of free information and helpful resources to show you how to tackle the NHS eligibility process for CHC. You can read our numerous articles, share experiences and learn from others by joining the conversation in our blogs and on Facebook. For more reading, we recommend that you buy our book, How To Get The NHS To Pay for Care (available as an e-book or paperback).

Admiral Mathias brought the inconsistencies surrounding CHC funding the public’s attention in February 2019 when the Daily Telegraph wrote a dramatic piece entitled:

“Vulnerable pensioners with dementia facing crippling care bills following NHS attempts to restrict funding”. You can read the article again here: https://www.telegraph.co.uk/news/2019/02/27/vulnerable-pensioners-dementia-facing-crippling-care-bills-following/

Those who say that battling the CHC for funding is not complex, difficult, stressful or emotionally challenging should take the matter up with the Admiral directly! He recently told BBC’s Victoria Derbyshire that “the system is massively complex and well beyond the average member of the public to understand”.

Care To Be Different previously featured Admiral Mathias’ case in our earlier article:

‘Fighting for NHS funding for my mother was as complex as my work on the nuclear deterrent…’

The Admiral first appeared on Victoria Derbyshire’s BBC TV programme, in June 2019, when he was interviewed about his first-hand experience of his 2 year battle with Wiltshire CCG to recover £200,000 for his mother’s nursing home fees that should have been funded by the NHS. If you missed it, you can read our article below:

Exposed: NHS Continuing Healthcare makes headline BBC News

You can also read more blogs around the subject here:

When are the Government going to fix CHC?

Is the National Framework still working effectively?

The revised National Framework – what impact will the changes have?

“Health Service is chaotic and dysfunctional, says NHS Chief”

“Care crisis fear as over 85s to double by 2043”

BBC Drama, “Care”, Shines A Spotlight On NHS Continuing Healthcare

We wish Admiral Mathias much luck in his campaign.

To read more about Admiral Mathias story and see his fundraising page visit: https://www.crowdjustice.com/case/the-nhs-continuing-healthcare-scandal/

You can add your comments below. Here’s what some of our readers have been saying…

MW says: “This is fantastic news! I’ve been hoping that Admiral Mathias would launch this challenge. Having Rear Admiral Mathias spearhead this legal action will force the Government to now listen and be accountable for the disgraceful way in which CCGs have been operating for too many years. Everyone should get behind this challenge. With an ageing population and almost 12 million people aged over 65 or above, this should be of concern to every sector of the population as we all live longer with complex health needs that will need nursing/care. I was successful in appeal at IRP for my late father, but I may well be faced with the horrendous process of CHC for my elderly mother in the future, something that I never want to face again.”

SM says: “NEWS TODAY: NHS TO BE TAKEN TO JUDICIAL REVIEW OVER NON-FUNDING OF DEMENTIA HEALTHCARE
— This ought to kick the Government out of its foot-dragging over putting forward recommendations for reform of CHC funding”

October 29, 2020/16 Comments/by Care To Be Different

NHS Continuing Healthcare

Paying Unfair Top-Up Fees? Latest Developments Will Send Shockwaves To Care Homes

Paying Unfair Top-Up Fees? Top-up fees are back in the public domain again as the Competition and Markets Authority (CMA) is reported to have reached an agreement with Care UK to repay its residents more than £1m for unfairly charged top-up fees, in contravention of the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care.

The CMA contend Care UK had breached consumer protection law by improperly charging their residents an unfair top-up fee towards the cost of their essential long-term complex healthcare needs. It is said that most of the residents were charged more than £300 per week. As a result, Care UK has now agreed to repay more than £1m to 160 residents across at least 20 of its premium care homes by the end of November this year.

You can read the full article here: More that £1m in refunds secured for care home residents

If this applies to your relative and you haven’t been contacted for a refund by the end of November, you can email: CHC.Fundingoffice@careuk.com

In our previous blog: TOP-UP FEES – Unfair Care Home Practices Now Face Government Sanctions (07/12/18) we first mentioned that the newly formed government-backed competition watchdog (CMA) had been set up. The CMA’s guidance, Care homes: consumer law advice for providers gives added consumer protection to residents in care homes. Breaches and infringements can lead to legal action under consumer law and also criminal fines imposed for care homes that do not comply. In particular, under CMA guidance, care homes must give clear, accurate and unambiguous information about the top-up fee arrangements. Transparency is critical. Some examples of breaches include: asking a resident to pay a large upfront non-refundable fee prior to becoming a resident; or insisting on the resident paying a shortfall as a condition of entering the home. We recommend that you read this blog if you think your relative has been charged an unlawful top-up fee , or visit their website: https://www.gov.uk/government/organisations/competition-and-markets-authority

This latest outcome indicates that the CMA are now flexing their muscles and are expected to investigate other care homes who may have also breached the rules set out in the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care rules. This could result in millions of fees that were unlawfully charged being refunded to residents.

This latest success for the CMA will undoubtedly send deep shockwaves throughout care homes in England and Wales, as many have been getting away with charging residents unlawful large upfront or top-up fees for years. We suspect many residents didn’t know what the additional charges were for, nor that they were actually unlawful.

This is great news for thousands of current and past residents in care or nursing homes who have been improperly charged and either coerced or deceived into paying additional top-up fees for their essential healthcare needs in contravention of the National Framework rules.

What are the National Framework rules about charging top-up fees?

The National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care makes it quite clear that when an individual is awarded NHS Continuing Healthcare Funding (CHC) all the cost of their assessed healthcare needs (including social care needs) and accommodation, should be paid for in full by their local Clinical Commissioning Group (CCG). Paragraph 180 of the National Framework sets out the core tenet that CHC is ‘free at the point of delivery’ (ie when it is needed):

“180. NHS care is free at the point of delivery. The funding provided by CCGs in NHS Continuing Healthcare packages should be sufficient to meet the needs identified in the care plan. Therefore it is not permissible for individuals to be asked to make any payments towards meeting their assessed needs.”

So, if CHC is supposed to fund the whole care package, free of charge, why are elderly and vulnerable residents in care homes being charged any additional fees?

These additional charges are often referred to as ‘top-up’ fees and are usually paid in relation to the cost of essential care, or more typically, for accommodation. Where a resident has CHC Funding in place it is unlawful for care homes to charge top-ups. Some, however, are quite open about it and make no bones that they are charging a top-up fee to meet the cost of living at their home. Transparent? Yes – but it still could be unlawful! More commonly, most care homes try and disguise this payment and call it something else such as a ‘personal contribution’ – perhaps deliberately trying to conceal the unlawful nature of its true identity. Whatever description is applied, if they relate to the individual’s assessed healthcare needs it is unlawful – as funding should be met in full by the CCG, not by the individual. This is why the CMA outcome against Care UK will have care homes nationwide running to re-examine their contracts and charging structures, and getting busy redrafting.

It is, however, permissible for care homes to charge ‘top-up’ fees for additional non-related healthcare needs such as social care needs; for example, manicures, pedicures, hairdressing, physiotherapy (sometimes referred to as hotel or spa-type services), or for personal preferences eg choosing to have a non-standard/larger room or one with a better view and amenities or luxuries. Top-up fees that relate to a personal ‘want’ rather than actual healthcare needs, are lawful, and your relative will have to pay for that preferential choice.

Why do care homes charge top-up fees?

The answer is quite simple. It’s all to do with cost.

The care home will have a contract with the CCG which is likely to pay them a fixed rate for the individual’s assessed healthcare needs at that home. If the costs of keeping the resident at the care home are more than they are being paid by the CCG, someone has to foot the bill for any shortfall. Care homes are businesses, too, with staff, grounds and usually high overheads. That all has to be paid for if the care home is going to maintain standards and not cut corners, avoid a CQC investigation, and moreover, stay open for business.

When challenged about top-up fees, care homes typically raise excuses such as:

it was your choice to place your relative in our care home;
this is what it costs for your relative to live here;
this is a high-end care home in an expensive residential area which costs more. You could always move to a cheaper home down the road;
you knew what you were paying for at the outset, so why are you now surprised by these additional charges?

If the current package of care funded by the CCG is insufficient to meet the individual’s increasing healthcare needs, then the care home should approach the CCG on behalf of the family for a reassessment and seek an increased package of care that more accurately reflects the true cost of that person’s care. For example, if more staff are required throughout the day and night to manage their challenging behaviours or complex healthcare needs, then that cost should be passed on to the CCG, not the individual. However, what happens in practice can be very different. Rather than contact the CCG to increase the care package, it is far simpler to take a direct approach and ask the family to pay (ie top-up) from private means instead. They are a captive audience and, of course, want their relative to be looked after in a secure, caring environment. So, for obvious reasons and to avoid confrontation, many will pay the asking price, thinking that is the norm. They are in a vulnerable position and just want peace of mind. In most cases, the top-ups can be very substantial – amounting to many hundreds of pounds (eg Care UK charge £300 per week). We have known top-up fees to be much higher. But, when multiplied over a number of months and years, can make a huge hole in your relative’s finances. Some care homes may also insist on taking security to guarantee payment eg a charge over your relative’s home.

What to look out for

Families often complain that their relative is being charged additional fees, but they have no idea what for, and tell us the care home is not providing anything extra or different from any other resident.

If this sounds familiar to you:

Check what the contract with the care home says about charging.
Check the invoices and annual payments. Has the cost gone up without explanation?
Does the invoice or contract blatantly refer to charging a ‘top-up’ fee or use some other description to try and conceal that it is really a top-up fee by another name (eg ‘personal contribution’)?
Was the contract fully explained to you and did you understand what you were signing?
What were you told or what justification was given about being charged additional fess over and above what the CCG are paying the care home for CHC?
Did you feel forced or coerced into paying these additional charges?
Was payment a condition of keeping your relative in the care home or were you ‘threatened’ (expressly or by implication) that if these charges weren’t paid, your relative couldn’t stay and would be put out onto the street?
Was your relative offered a choice of different levels of room (eg ‘superior’, ‘deluxe’ or ‘standard’) and did they choose a better standard of room or were all the rooms exactly the same? If they chose a better than standard room eg bigger with better facilities/view, then unless it is specifically required for their assessed healthcare needs (common examples include wheelchair access and use of a hoist) the care home can charge this extra cost.

What can you do?

If you think your relative is charged unlawful top-up fees, then if you feel confident to do so, you should consider raising the issue with the care home manager. Request an explanation as to what these charges relate to, and if it appears they truly are unlawful top-up fees, ask why they have been charged in contravention of the National Framework, and seek a refund.

If it’s clearly an unlawful top-up fee, don’t accept the usual excuses that “this is what it costs to keep your relative here…”

You can always threaten to report the matter to the CCG if you feel their actions are contrary to the National Framework, and point out that the CCG may remove them from the list of approved care home providers.

Try contacting the CMA and request that they carry out an investigation as to any unlawful top-up fees. However, the CMA can only secure refunds dating back to 1^st October 2015.

The care home is unlikely to take kindly to being challenged on the matter. This is a very specialised area and we recommend you seek legal advice. Visit our one-to-one page for details.

How far can I go back to claim?

Unfortunately, the position is not very clear.

Now that the CMA are now aggressively operating in this area, it may be a question of making a complaint to them and letting them investigate the matter for you.

Under the National Framework there is no time limit. The Framework merely provides guidance that such charges are unlawful, but it doesn’t necessarily give rise to legal action in itself.

Whilst we don’t give legal advice. Generally speaking, if you want to bring a legal action yourself to recover the care home fees in court, under the Limitation Act 1980 there is a 6 year period within which your claim should be settled, or court proceedings should be issued to extend the life of the claim beyond this date. This 6 year period usually starts from the date of the contract or from when the last payment was made or when you discovered the mistake. It really depends on the individual facts and circumstances of each particular case. However, we recommend that you seek legal advice to make sure you are in time to claim.

If your contract was more than 6 years ago, and your last payment was also more than 6 years ago, and you only discovered the extra charging after 6 years, then it is unlikely much can be done.

If your contract was more than 6 years ago, but your last payment was made within the last 6 years, you may still be in time. However, if you have delayed pursuing a claim, then you might be out of time and statute-barred, too.

The matter is complicated and is an area where we strongly recommend you seek legal advice if you wish to pursue a legal action as the matter is not clear cut.

For additional reading: Are You Paying Top-Up Fees Unnecessarily?

If your relative has been charged an unlawful top-up fee, tell others what you did and how you handled the situation and whether you were successful in getting reimbursed…

October 16, 2020/3 Comments/by Care To Be Different

NHS Continuing Healthcare

Confused? Read This Before You Start Your Retrospective Appeal for CHC Funding…

A retrospective appeal for CHC Funding or how to reclaim fees that have already been paid.

From 1^st September 2020, the Government has instructed Clinical Commissioning Groups (CCGs) to restart their retrospective appeals.

Retrospective appeals look at whether an individual was historically entitled to NHS Continuing Healthcare Funding (CHC). If found eligible on appeal, they should have all their care fees that were paid during the period of eligibility refunded by the NHS in full, including the cost of accommodation.

Often families have been forced to sell their relative’s home or use savings or other assets to pay for their care. To retrospectively recover these funds for care fees that were wrongly charged can make a huge financial difference to most families and give them a true sense that their relative’s rights have been vindicated.

However, the current backlog of retrospective reviews is thought to be substantial and includes both appeals that were previously waiting to be decided pre-COVID (19^th March 2020) as well as those deferred or postponed since this date due to COVID-19. One would expect that these outstanding appeals should take priority over any new appeals now being lodged with CCGs since 1^st September 2020. It is anticipated that there are many thousands of cases currently waiting in the appeal queue.

But don’t be surprised if CCGs have a ‘knee-jerk’ reaction to the Government’s mandate and proceed with all haste, throwing huge resources at the problem to try and catch up and make some quick inroads into their backlogs. Wishful thinking? Perhaps.

The result: you might not get too much notice that your relative’s appeal is ready to be heard. Contrary to years of lethargy and delays chasing appeal dates, your relative’s appeal might now be dealt with at panel far sooner than expected. Whereas pre-COVID it could take many, many months waiting for an appeal to come to panel, it is possible that these timescales may be substantially truncated as CCGs try and bash out as many appeals as possible in a short timeframe and meet targets. Only time will tell whether this is a realistic or even achievable prospect. However, reduced waiting times will generally be welcomed by families if this becomes a positive reality. Quicker decisions should convert to quicker refunds!

If your relative’s retrospective claim for CHC Funding has been turned down by their local Clinical Commissioning Group and you think the decision is wrong or flawed or did not follow the correct process, then you must appeal.

You only have 6 months to lodge your appeal from the date you receive notification of the CCG’s outcome letter rejecting your relative’s claim for CHC. Whilst that might seem like a long time, from experience, there is much work to be done if you are going to present your appeal successfully. Take time to do the job properly.

Your relative’s appeal deserves proper consideration. A successful outcome could see many thousands of pounds (plus backdated interest!) being refunded for care fees that were incorrectly charged and should never have been paid had a fair and robust assessment of their healthcare needs been properly undertaken by the CCG in the first place.

Excluding the Parliamentary and Health Service Ombudsman, there are 2 principal levels of appeal:

1. The first is from the Multi-Disciplinary Team Meeting (MDT) to a Local Resolution Meeting. The LRM is conducted by the CCG themselves and is your first real chance to get your relative’s CHC Funding reinstated. This is a very important appeal stage and often families do not prepare for it adequately, and so consequentially find themselves totally out of their depth or outflanked by the CCG’s appeal team. Decisions should never be influenced by financial budgeting constraints.

Failure at LRM can lead to months of delays (12 -18 months are quite common) whilst waiting for your next appeal and outcome decision. So, take advantage of this opportunity to give your appeal its best chance of success.

Read our blog: Rejected for CHC Funding? Part 1: How To Appeal The MDT Decision

2. Don’t worry if your appeal to the LRM is unsuccessful as you can still appeal to the next stage. This is an appeal to an Independent Review Panel conducted by NHS England. The IRP is chaired by a lay independent chairman and is also comprised of at least 2 other members (a representative from the social services team and one from the NHS). The IRP follows a similar process to the LRM panel appeal but is entirely independent of the CCG.

By now most of the arguments have been raised by both sides and it is a question of refining your case based on the LRM’s findings set out in their outcome decision and challenging their rationale (reasoning for their decision). Consequently, your appeal submissions will be far less lengthy, but must be punchy and targeted for direct pinpoint attacks to achieve a successful outcome. Concentrate your efforts on finding errors in the LRM’s rationale and looking at the 4 Key Indicators.

Read this exclusive blog by an IPR Chair which offers some very helpful practical tips: An exclusive Q & A interview with an IRP Chair – a rare insight into conducting your appeal and knowing what to expect on the day.

Rejected for CHC Funding? Part 2: How to appeal the Local Resolution Decision

Here are 10 tips to help you prepare for your appeal to the LRM or IRP:

1. Don’t procrastinate! 6 months soon fly.

2. Early preparation is essential to maintaining momentum. Make no mistake, preparing your appeal is onerous and will take many hours, if not weeks, to do the job properly. It is not something that can be rushed or else vital information may be missed from your appeal submissions.

3. Get hold of all relevant medical notes and records, including GP, hospital and care home records as soon as you can. It is not enough that you know your relative’s healthcare needs and can articulate them before an appeal panel. You also need to be able to point to records in support. Your testimony and evidence is vital, but so, too, is what is printed in the notes in black and white. Look for the evidence to support your written appeal submissions. Here are two previous blogs to help you:

Need help getting copies of your relative’s care home records?

June’s feature on flawed CHC assessments and the importance of good record keeping

There should be no cost getting the care notes and medical records and the record providers should comply within one calendar month of receiving your Subject Access Request. However, due to COVID and induced staff shortages, it is often taking some organisations far longer than the allotted time. So be prepared for delays and keep chasing the records. They are essential to support your appeal submissions.

For more information as to collating your relative’s records look at the sub-paragraph, ‘How to access your notes and records’ contained in this blog: Essential Preparation and Planning As CCGs Restart Assessments and Appeals From 01/09/2020

4. Read the National Framework for NHS Continuing Healthcare Funding and NHS-funded Nursing Care. Understand the appeal process and what is required. Whilst helpful guidance is provided within the National Framework, it doesn’t tell you how to actually draft your appeal submissions and what is needed to make a fist of your appeal and give it your best shot. That is where years of professional expertise in CHC Funding can really assist. If you don’t have the time or are totally bewildered by the appeal process and don’t know where to start, visit our one-to-one page for more information and professional expert help.

5. Get to grips with the 4 Key Indicators and understand how the appeal panels adopt a holistic approach when assessing overall care needs and reaching their rationale decision on eligibility for CHC Funding. Read our blogs for more information:

For more reading around the subject, look at these blogs:

PART 1 – Looking At The 4 Key Indicators: Unlocking the Basics
PART 2 – Looking At The 4 Key Indicators: Gathering pieces of evidence
PART 3 – Looking At The Four Key Indicators: Completing the Jigsaw
PART 4 – Looking At The Four Key Indicators: Drafting Your Conclusions

6. Once you have lodged your appeal the CCG will provide you with their Needs Portrayal Document (NPD) – click on this link to see a sample template.

The NPD incorporates a similar format as the Decision Support Tool used at the MDT and includes a patient summary, summary of evidence reviewed and the 12 Care Domains. At the back there are guidance notes which state the author of the NPD must have appropriate skills and training to complete it.

Under each of the 12 Care Domains (Breathing, Nutrition, Continence, Skin integrity, Mobility, Communication, Psychological and emotional needs, Cognition, Behaviour, Drugs/Medication, Altered states of consciousness & Other), the CCG will list a chronology of relevant entries taken from all the available medical notes and records that reflect your relative’s changing needs. The CCG will use the NPD to make their recommendation as to retrospective eligibility for CHC Funding (or more cynically, to support their previous decision rejecting eligibility for CHC).

Your job is to analyse these records in detail and point out all missing entries in their chronology that support your relative’s intense, complex and challenging healthcare needs within each Care Domain. Whilst you may feel that some entries in the records are trivial or repetitive, they can all be very useful evidence in building up a picture of your relative’s needs and the nature and frequency of skilled care required to manage them.

Watch out, as some of the CCG’s entries stated in the NPD may be abbreviated, misquoted or incomplete, throwing a different slant on the actual entry in the records and impacting on the overall outcome.

Each entry in the CCG’s NPD has to be meticulously checked and cross-referenced against the original to ensure that it is fully and accurately quoted. There is an art to drafting your own written appeal submissions in response to the CCG’s NPD, and from experience, it is extremely time-consuming! You need to have the patience to diligently consider every single relevant entry throughout mountains of records and then, where appropriate, allocate it to one or more of the relevant Care Domains. Knowing what evidence is relevant and where to insert it is an acquired skill. Whilst doing this, you also need to check whether the CCG have already included it in the NPD, and if so, whether it has been quoted correctly as written exactly in the records. Point out their errors to your advantage. Paraphrasing an entry or putting spin on it as to what they think it says is not good enough. The entry must be accurately stated to be meaningful. As you can appreciate, this is a laborious and emotionally challenging task, which is why many families seek professional help.

7. Families often tell us that attending the appeal itself can be an intimidating and daunting process. Those who have been through the process alone tell us that confronting the CCG’s assessors face-to-face (or now over Zoom) at an LRM or IRP is no easy task. They know the National Framework inside out and have had years of experience attending appeals. Most CCG representatives are battle-hardened and used to defending their decisions to refuse CHC Funding. Not only is it an emotional time for families having to recap and recount their dear relative’s healthcare needs in detail, but there is also the real fear that they may not succeed and do their relative’s case justice. A poor appeal showing could result in the loss of huge care fees paid from the sale of family assets or home, not being recouped. The pressure to succeed and achieve a successful outcome can be stressful and too much for many as there can be a lot riding on the outcome of the appeal.

To prevent ‘red mist’ and becoming frustrated, losing your temper and risk the appeal descending into a controversial adversarial shouting process, you should consider getting professional advocacy support. A trained CHC advocate who ‘knows their stuff’ should be able to take the strain and weight off your shoulders and argue with their CHC counterparts on at least a level basis.

Employing an advocate as a hired gun doesn’t automatically guarantee success. However, it should give you a much better opportunity than presenting the appeal yourself against the NHS. Even a seasoned CHC campaigner like retired nuclear submarine commander, Admiral Mathias, featured on our website, struggled with his mother’s retrospective claim. How much more so will the average person on the street be overwhelmed by the appeal process and know how make the most of this opportunity. Some lone ‘soldiers’ will inevitably be successful and will be emboldened by Admiral Mathias’ heroic struggle and the free resources and information on this website. But sadly, there will be many casualties along the way for those who fight alone without expert reinforcements to support their battle. For more information read: ‘Fighting for NHS funding for my mother was as complex as my work on the nuclear deterrent…’

Remember though, CHC is not black and white. And whilst you can argue for eligibility, you must be realistic and pragmatic and not let your emotions overtake you. However strongly you feel, you cannot simply make your relative eligible for CHC if they clearly aren’t. It just doesn’t work that way. You have to look at their healthcare needs holistically.

8. Read our self-help book: How To Get The NHS To Pay For Care available as an e-book/PDF or paperback.

9. If you want to speak to a registered nurse to discuss your CHC queries get in touch via our CHC Nurse Advice Line Service.

10. When thinking about your relative’s appeal, don’t forget that you if you succeed, you will need to produce evidence to satisfy the CCG as to the amount of care fees that are due to be reimbursed. Too often, families discard vital evidence and correspondence too quickly, not realising its critical value if the retrospective claim is successful. The burden is on you to prove your loss. You must keep all relevant letters and documents. No proof may mean no reimbursement!

You must keep (or get hold of) invoices and a detailed Statement of Account from the care home on official stationery showing what sums were charged and when they were paid. This still might not satisfy most CCGs, so in addition, we strongly recommend that you obtain bank statements from the account(s) the care fees were paid to the care home. Keep these documents safe!

For further reading: What Evidence Do I Need To Prove My Claim For Past Care Fees Paid?

We recommend that you also read these helpful blogs:

Part 1 – Revealing Insights From A Continuing Healthcare Nurse Advocate…

Part 2 – Revealing Insights From A Continuing Healthcare Nurse Advocate…

Retrospective Reviews for past periods of care – avoiding fatal mistakes

Tell us about your experiences of preparing your appeal and share your tips for success (or mistakes made) to help others who are waiting for their appeal…

October 2, 2020/1 Comment/by Care To Be Different

Care fees, NHS Continuing Healthcare

Should you pay care fees if your NHS Continuing Healthcare Funding is refused or withdrawn?

Should you pay care fees?

We’re often asked this question, and it’s an area many people find confusing. We always advise people not to start paying care fees automatically, but to consider challenging what they’re told by the Continuing Healthcare assessors. However, whether you are obliged to pay largely depends on what stage of the assessment, review or appeal stage you have reached. We explore 5 different situations below and offer our guidance to help you.

There are many good health and social care workers. At the same time, there are many who seem to have only scant understanding of the official guidelines (and the law) when it comes to NHS Continuing Healthcare Funding (CHC). Unfortunately, this can lead to many families being given incorrect information and their relative being inappropriately railroaded into paying care fees before the proper funding decision-making process is complete.

The National Framework for NHS Continuing Healthcare and NHS-Funded Nursing Care (revised October 2018) provides the official guidelines that dictate how eligibility for NHS CHC Funding should be carried and who has to pay. All Clinical Commissioning Groups (CCGs) are bound by these NHS guidelines and are obliged to follow them when carrying out their CHC assessments, reviews and appeals.

Only if it is clearly and reliably shown that a person is not entitled to NHS care (no matter what their age or circumstances) should CHC Funding be refused. However, if you genuinely believe that your relative has had their funding incorrectly withdrawn or wrongly declined, then consider whether there were any flaws in the CHC process or if the eligibility criteria were incorrectly applied. Take immediate action to address any concerns you have as delay could be detrimental to your relative’s entitlement to funding.

Disputes about CHC eligibility are always ultimately about money and who pays – whether it’s your relative who may be self-funding, the NHS and/or the local authority.

Let’s look at 5 common scenarios where your relative could be asked to pay for their care and what you can do:

1. Waiting for an initial Checklist assessment after discharge from hospital

Under the 2018 revised version of the National Framework, it is now preferable that assessments for CHC Funding should take place outside the acute hospital setting so as not to delay a patient’s discharge and to get a more accurate assessment of their long-term healthcare needs (see paragraphs 109 – 111).

Under new Government guidance, with effect from 1^st September 2020, when an individual is ready to be discharged safely from hospital, the NHS should put funding in place to support their recovery and rehabilitation needs for the first 6 weeks whilst an assessment for CHC Funding is completed.

If this process takes longer than 6 weeks, the NHS and/or Local Authority will continue to pay for care until that assessment takes place and the decision is notified to you. In the meantime, your relative should not be required to pay for their care.

The position is similar to paragraph 112 of the National Framework, which states that when a person who needs a care package is discharged from hospital: “There must be no gap in the provision of appropriate support to meet the individual’s needs.” And so, they are entitled to an interim package of care until their healthcare needs can be properly assessed.

So, just because an assessment has been deferred or delayed by the NHS, this should not let the NHS off the hook in funding your relative’s care in the interim period.

What’s more, if there is a dispute between the NHS and Local Authority as to which organisation has to pay for care, that should not affect your relative’s funding which should continue regardless without any gaps. The National Framework helpfully sets out detailed guidance as to how these organisations should attempt to resolve disputes over funding between themselves:

208 & 210: “Individuals must never be left without appropriate support while disputes between statutory bodies about funding responsibilities are resolved.”

213: “In situations where there is a dispute between CCGs regarding responsibility for an individual, then the underlying principle is that there should be no gaps in responsibility as a result. No treatment should be refused or delayed due to uncertainty or ambiguity as to which CCG is responsible for funding an individual’s healthcare provision. CCGs should agree interim responsibilities for who funds the package until the dispute is resolved. Where the CCGs are unable to resolve their dispute using current guidance, as a last resort the matter should be referred to NHS England.”

The clear overriding principle is that there should be no gap in your relative’s care and that the nature of the funding should not be changed (or illegally forced upon someone) just because a final funding decision has not yet been reached.

This applies whether or not your relative is already in care or not. If the NHS can’t get its act together regarding funding decisions, it’s not the fault of the individual being asked to pay fees.

But should you pay care fees?

In short, the answer is ‘no’. If your relative has been discharged from hospital and is awaiting a Checklist assessment, they should not be asked to pay for their care until it has taken place and the decision has been notified to you.

However, if your relative does not pass the initial Checklist assessment, then it is likely that their care needs are not of a sufficiently high level at that stage, and so, they will have to pay for their care unless local authority funding is available instead.

2. You’ve passed the Checklist assessment and are awaiting the outcome decision of the Full Assessment

The Full Assessment is carried out by a Multi-Disciplinary Team (MDT). If CHC Funding is awarded, then the NHS will pay for all your relative’s assessed healthcare needs including their accommodation and they shouldn’t be asked to pay a penny. Success!

But should you pay care fees?

However, whilst waiting for the MDT outcome, your relative may be required to pay for their own care. Read our suggestions below, if your relative falls into this category.

3. Refused funding after the Full MDT Assessment?

If, however, the MDT do not recommend CHC Funding and your relative’s application is rejected by the CCG, ordinarily, they will be expected to pay for their own care fees – whether through local authority funding or else from their own private means.

If you believe that MDT assessment was flawed or the decision to refuse funding is wrong, then make sure you appeal. You only have 6 months to lodge your appeal, so do not delay!

In the meantime, your relative will usually be required to pay for their care whilst their appeal is pending. Beware, that some appeals can take many months – sometimes as long as 12 to 18 months, so the sooner you can lodge your appeal, the better. There are plenty of helpful blogs and resources on our website giving guidance and help with your appeal, but don’t forget you can always seek professional expert advice and advocacy support with your appeal.

4. Been turned down for CHC funding after a 3 or 12 monthly review?

If CHC Funding is awarded, CCGs are obliged to carry out an initial review at 3 months, and then again, every 12 months thereafter. In the current COVID-19 environment, nearly all these reviews were put on hold since March 2020. But, since the 1^st September 2020, CCGs have been told by the Government to get back to business and restart reviews.

Often, people receiving CHC Funding for care find that their funding is taken away after a review. From viewing our readers’ comments, there was a time where it seemed that CCGs were targeting people who have previously been awarded full CHC Funding – and systematically taking it away. This was happening to people whose care needs had actually increased and whose health was deteriorating, and to people who needed round-the-clock nursing care.

The case of John Morrison highlighted in Victoria Derbyshire’s BBC documentary on 11^th June 2019 is one such vivid example. John suffers with cerebral palsy and has no use of his limbs. John was initially granted CHC Funding, but it was then withdrawn upon review in 2009 – despite clearly having healthcare needs which had not improved. Following a lengthy 10 year battle with the CCG, John’s CHC Funding was finally reinstated – leaving his family to retrospectively reclaim an estimated £300,000 for wrongly charged fees. You can read more about John’s case and the issue concerning reviews in our blog: Exposed: NHS Continuing Healthcare makes headline BBC News.

However, with the latest 2018 edition of the National Framework, the emphasis has noticeably changed. According to paragraph 183 of the National Framework, “These reviews should primarily focus on whether the plan or arrangements remain appropriate to meet the individual’s needs. It is expected in the majority of cases there will be no need to reassess for eligibility.” Therefore, reviews should no longer be regarded as an excuse for CCGs to withdraw existing funding unless there is evidence of a clear change in the individual’s needs, in which case the matter can be referred back to an MDT for reassessment. This is probably why so many families still fear these reviews and have sleepless nights worrying that their relative’s genuine need for funding could still be taken away, leaving them to self-fund, despite the obvious need for CHC Funding (just like John Morrison’s case).

But should you pay care fees?

Whilst the review is underway or reassessment by an MDT is in process, your relative should not be required to pay for their care until the outcome decision is made.

If, however, CHC funding is subsequently withdrawn, your relative will probably be told to start paying for their care – often using private means and savings, or they may even be forced to sell their home (unless they are eligible for local authority funding instead).

For more information, read our blog:

Beware! Annual Reviews can lead to CHC Funded Care being withdrawn

5. Been turned down for CHC Funding on appeal?

If you’ve reached the end of the line and your appeal to either the CCG’s Local Resolution Panel or to an NHS England Independent Review Panel are unsuccessful, then your relative will have to pay or make arrangements to cover the cost of their care either with the help of local authority funding or from their own private assets or savings.

What can you do about care fees?

If your relative has been awarded CHC Funding, the CCG will pay the cost of their care directly to the care home on your behalf. There will be an agreement in place between the CCG and the care home, so if the CCG stop paying, then arguably, it is for the care provider to chase payment and ensure that they are paid.

Generally speaking, if you are waiting the outcome of an assessment or appeal, you can try speaking to the care home manager to see if they are willing to defer payment until a decision has been reached. Suggest that they send their invoices to the CCG for payment pending resolution of these matters or else hold them in abeyance, as ultimately, you believe the CCG will be responsible once the matter is resolved (or any flawed decision is overturned).

Naturally, most care homes may not be too sympathetic to the idea of deferring payment or putting themselves into direct conflict with their local CCG (or local authority) whilst you wait for a decision on funding. Don’t forget, they too have a business to run, and in many circumstances it will be easier to seek payment from the family under the terms of their contract for care services, than it will be to approach the NHS. Understandably, many families will tread carefully, for fear of affecting the relationship with the care home, especially whilst they are looking after your relative. Some families will therefore choose to continue paying care fees as the safer option and just for peace of mind, while others may try to negotiate and hold out until the funding decision has gone through. It often comes down to doing what you feel most comfortable with and whether you think you might get a sympathetic response from the care home.

Remember, you are entitled to have specialist advocacy support at any stage of your relative’s assessment, review or appeal. Visit our one-to-one page if you need specialist assistance.

Share your experiences below of situations where you felt coerced into paying care fees and how you successfully dealt with the situation…

September 18, 2020/8 Comments/by Care To Be Different